Re: New York City mom seeking helmet recommendations

[Guest guest]

Hi Amy,

welcome to the group. There is a cranial tech (www.cranialtech.com) in NJ some

people travel to from NY. There is also a place called kidi-splints? in NYC that

is a starband provider. Not sure where in the city. I have heard good things

about both these places (more so about CT, but I think because more people go

there). Hopefully some local parents will reply also.

-christine

sydney, 4.5 yrs, starband grad

>

> HI, I'm new to the group. My son is nearly 7 months old and has been

diagnosed with Torticollis & mild/moderate Plagiocephaly. He receives physical

therapy twice a week and now we are being told to get the helmet. I have tried

searching the archives but can't seem to find anything about Manhattan. Can

anyone recommend Hanger vs. Star in New York City vs. CT (based in New Jersey)?

I am so upset and nervous about the helmet (as I'm sure you all experienced) and

want to ensure I make the right decision for him .

> Thanks in advance for your advice.

> -Amy

>

[Guest guest]

Hi Amy, There was a couple of families from NYC last year that asked about

STARband at Arimed and CT in Paramus, NJ(I don't know much about Hangar in NY.

I'm cutting and pasting my reply to them. Type in Arimed, NY in the search box

in the message section and you can read all our messages.

Good luck! If you have any other questions, please let me know.

Luke, 23 months, brachy/plagio

STARband 4/09-6/09, DOCband 9/09-12/09

12/11/09

Hi , I took my son to Arimed from 4/7-6/10/09 for a STARband. If you are

able to go to CT, I would go there. We ended up banding Luke at CT 9/2-12/7/09

and I wish I had gone there first. We chose Arimed initially because we didn't

have an option for transportation to Paramus. You'll probably be going to CT

every 2 weeks because of your daughter's age. I completely believe that my son

would have only been in one band if we had gone to CT first. At 8 months, your

daughter will still be able to get great results.

If you do end up at Arimed, try to have ALL your appointments with Bill, not

Mohammed. Nice man, but the biggest problem was that he didn't listen to my

concerns. The women working there are extremely helpful with appointments and

fitting you in at the last minute (which happened to me often).

If you have any further questions, I'd be happy to answer them if I can.

------------------------------------------------------------

12/12/09

Hey ,

Luke started wearing his band at 5-7months old and had severe brachy. His CI

went from 97.5% to 91% in his STARband.

CT said his CI was 93% when he was measured in August for his band (at 9.5

months old) and he graduated at 88%. CT also said he had severe plagio: 14mm and

he graduated at 4mm. At Arimed, I didn't even know how severe his plagio was or

that he was severe because Mohammed told me that his diagonal difference as 6mm.

That was one issue that I had with Mohammed. He always said that everything was

" okay " and that Luke looked " good " . Whenever I brought up my concerns, we went

in circles. He just kept saying the same things over and over again. It was

infuriating. I finally had to consult with Bill, but by then, I was so defeated

and stressed.

The biggest issue I had was that Luke's band rotated to the left too much. It

folded over his right ear and squished his right eye so much that it was swollen

when he woke up.

I went to see Mohammed every other day for the first 2 weeks and he couldn't get

it to stop rotating. The helmet was too big to me. I kept telling him that and

he kept telling me that that is how the helmet worked and because of Luke's head

shape, the rotation would keep occurring. Which is the truth, but the rotation

should not be SO much.

Under the suggestion from a member of this group, I asked him to put some

padding at the posterior opening of Luke's helmet. He said it wouldn't help and

that it would make an indentation to his head. I asked at 4 different

appointments during a span of 1.5 weeks. He kept saying no. I finally ended up

cutting up some moleskin and applying it. It helped decrease the rotation. I

showed it to him at the next appointment and he told me that it was because

Luke's head had grown!.!.!

Bill helped a bit, however, he is only at the office 2 days a week, so I didn't

get to see him as much as I had wanted to.

Also, there were never any pressure spots. I kept bringing that up and Mohammed

kept saying that it was " okay " and everything was " good. " (I'm getting angry

just thinking about it!)

If you do go to Arimed, bring some toys that are distracting, because Mohammed

has no idea how to deal with babies and your daughter has to stay still for

about 3 seconds in the STARscanner. It can be the looooongest 3 seconds of your

life. Especially if your daughter doesn't like to lay down.

If you feel the scan did not go well, insist that you keep doing them until you

are satisfied. That was my first mistake. And make sure that when he says he is

ready to scan, that he is READY to scan. I can't tell you how many times, he

would say he was ready, I would lay Luke down, Luke would actually be still and

Mohammed did not push the button to scan. And then it would be impossible to get

Luke to be still again.

I know that Luke's measurements went down in his STARband. I am happy about

that. However, I think he would have improved so much more and would have had

only one band if he had a better fitting helmet and a more competent ortho.

Please contact me if you have any other questions. I do not want anyone else to

go through what I went through.

p.s. Be prepared to hear a lot of " okays " being said. You'll understand when it

happens. I can still hear it......

>

> HI, I'm new to the group. My son is nearly 7 months old and has been

diagnosed with Torticollis & mild/moderate Plagiocephaly. He receives physical

therapy twice a week and now we are being told to get the helmet. I have tried

searching the archives but can't seem to find anything about Manhattan. Can

anyone recommend Hanger vs. Star in New York City vs. CT (based in New Jersey)?

I am so upset and nervous about the helmet (as I'm sure you all experienced) and

want to ensure I make the right decision for him .

> Thanks in advance for your advice.

> -Amy

>

[Guest guest]

I go to CT in Paramus, NJ. We see there. We have been quite happy so

far. All the staff are friendly and I feel like they know what they're talking

about. Best of luck to you. It seems scary and upsetting at first, but

hopefully your baby will adjust quickly and easily and the time will fly by.

Tyler has made amazing progress in the 2.5 months he's been in his band (which

he received just prior to his 13 month marker). We're so happy we did this for

him.

Keep us posted!

[Guest guest]

We went to CT in Paramus as well. We rented a zip car every 2 weeks and drove

over from Brooklyn. It's a trek and means missing time at work etc, but

ultimately it was the right move for us.

We started w/ someone who moved back to the home office, then worked with

. I have to be honest and say that we had a problem with .

After a seeing progress early I kept pointing out that she didn't need to carve

out the helmet much or at all when the baby hadn't grown. She kept doing it any

way. Within a few weeks the helmet wasn't fitting well and she told us the baby

had almost outgrown it. There's more to it than that, but that's the basics. She

was telling us my daughter had outgrown her helmet after only 8-10 weeks when

she got it at 9 months and wasn't growing. This is a kid who only gained 3 oz

between 9 and 12 months. kept saying she saw improvement. I kept

saying I did not and was concerned about her growing up on the wrong side

because the helmet wasn't holding anymore. We did a photo study and

tried to say she saw improvement that I couldn't see.

I got a call a week later. It turns out that when they sent the photos back to

the home office, the orthotist agreed with me that the helmet wasn't fitting

well and they offered to give us a second/replacement for free. We did and

started working with Purvi who I believe is their senior tech at this point. My

daughter wore that helmet for about 3 months until she outgrew it. We got much

more improvement though it's not perfect. It wasn't going to be given her age

and when she did and didn't have growth spurts.

Good luck,

ED

>

> I go to CT in Paramus, NJ. We see there. We have been quite happy

so far. All the staff are friendly and I feel like they know what they're

talking about. Best of luck to you. It seems scary and upsetting at first, but

hopefully your baby will adjust quickly and easily and the time will fly by.

>

> Tyler has made amazing progress in the 2.5 months he's been in his band (which

he received just prior to his 13 month marker). We're so happy we did this for

him.

>

> Keep us posted!

>

>

>

[Guest guest]

We go to Cranial Technologies in Paramus, NJ and so far, they have been

excellent! It's a quick drive from Manhattan, as long as you don't schedule your

appointments during rush hour. We live in central NJ and it takes us about 50

min. The staff are all helpful, enthusiastic and supportive. I highly recommend

them!

> >

> > HI, I'm new to the group. My son is nearly 7 months old and has been

diagnosed with Torticollis & mild/moderate Plagiocephaly. He receives physical

therapy twice a week and now we are being told to get the helmet. I have tried

searching the archives but can't seem to find anything about Manhattan. Can

anyone recommend Hanger vs. Star in New York City vs. CT (based in New Jersey)?

I am so upset and nervous about the helmet (as I'm sure you all experienced) and

want to ensure I make the right decision for him .

> > Thanks in advance for your advice.

> > -Amy

> >

>